A self-appointed bug in childhood, this woman now finds many a thing to have a beef with.
Really, though, it's the only alliterative title that I could live with at the time of blog conception. LoonieLizzie was too self deprecating; EccentricElizabeth had too many syllables.

Monday, November 24, 2014

Ms Jan* brought some fun Fall activities a few weeks ago*. I found this apple behind the T.V.* after she left. I found it again with tooth marks* in it.

Ms Jan - This woman has loved us all really well the past year. And loving us isn't in her job description. Jan is T's Early Intervention Specialist. According to my handbook she is trained to, "address all areas of development." Though it's a large bill to fill, she has exceeded it.

Conversations with her last year helped me recognize that T's delays weren't just a bump in the road, they were the road. She hugs T. She brings activities for N. She tells AB how delightful she is. She was the very first person to ask me how I was doing as our path to awareness was becoming clear. She is patient and kind with T and adapts her day to fit his needs. She recognizes that N is an integral part of T's development, not a hindrance to it. She marvels at how AB has grown. She has connected me with resources in the community. She helped me realize that all the diagnoses qualify as a disability and, therefore, qualify for assistance. Ms. Jan rocks.

a few weeks ago - Ms. Jan came to our house for the last time a few weeks ago. T has aged out of the program that Ms. Jan works for. I'm so bummed that I'm trying to find time to call the state to ask them to change their rules. She quickly became a treasured part of our lives. Just as losing a family member that you see every week is a loss, being too old to hang with Ms. Jan is a loss.

behind the T.V. - the apple hadn't just rolled behind the T.V. It was chucked back there. I could tell because it was tangled in the wires behind it, a few inches off the floor. T has a strong sense of order; unfortunately, it hardly ever aligns with my system of order. Apparently, the apple belongs behind the television. Just like socks belong in the shoe pile, airplanes belong dumped in front of the book shelf, and all doors must be shut.

some bites - oh, those bites are what have morphed a piece of decor into a treasured keepsake. After I found the apple behind the television I put it on my desk to remember to take it to Ms. Jan. The next time I found it, the apple bore at least six sets of teeth marks. There might be a seventh, it's hard to discern.

Those teeth marks represent so many things to me: T sticks everything in his mouth. He is persistent. He will push a chair and climb to whatever he wants. He loves apples. He's little.

The days are coming when his teeth will make much bigger marks. He might still be putting decorative apples into his mouth then. Only it won't be as cute when he's 23. The days of his disability being adorable are flying by. M and I will always see our beloved son, but soon the rest of the world will see a boy/teenager/man with developmental delays. Now, most people think it is darling the dedication T puts into removing his shoes. Very few people get mushy goofy smiles on their faces at the sight of grown men struggling to take off their shoes.

I love being a mom to small children. These little years are jam-packed with joy. This apple reminds me of the little years with all my kids, but especially with T-Man. It reminds me of Ms. Jan. It reminds me of the wild year we have had. It makes me smile.

If my house were on fire, and all my family members were safe, and I could run in and grab just one thing, it just might be this apple.

Thursday, October 2, 2014

I should not be taking time to sit and write. Here's my view of the world this moment:

The clothes to the left need to be stored away in totes, in case we have another boy that wears size 2T clothing. T-Man has outgrown them. The train sitting on the desk needs new batteries. But first I need to buy more batteries. The giant stack of papers to the right is the bane of my existence. I need a secretary. When I leaned back in my chair to get a broad view of my chaotic room I squished N's backpack filled with three-week-old (undone) school work. The pink hat to the right of the screen has been sitting there for a month, waiting for a home.

But I am writing. Because everything is right with life. And everything is wrong. The rightness and wrongness of life depend on who I'm with. (Though my inability to get this stinkin' text to realign to the left is feeling very wrong, and I'm the only one here.)

Here's what's right with life: My family is awesome. My man loves my kids as much as I do. Here is he laying down the law with our wiggly little girl.

Though I am a novice at sewing, I did manage to throw together some fabric to make hero capes for Christmas last year. N's came in handy when he got a free meal for being dressed as a super hero. The most delicious thing was watching him face off with another masked boy. It was the stuff that commercials are made of. I didn't feel like asking the other action star's parents for permission to take his picture, so I'm treasuring that moment in my heart.

Something else right? Benadryl. Allergies are awful but medicine is available. Double bonus is the medicine makes children sleepy during the long drive back home from the neurosurgeon.

This couldn't get any better. M set up my hammock for me a couple of Sundays ago. First I swung out there in the breeze with my Bible. Then the wild ones joined me.

Here's what's wrong: The last sentence took five minutes to complete. Between typing the word "me" and the period I stopped to unclog a toilet, discovered a bathroom fixture defaced and sprayed a half gallon of lysol.

The day to day chaos of life isn't really wrong, though. That was thrown in for comedic relief. What's really wrong is how many government agencies I have talked to this week. Just typing that reminded me that I need to call someone back because I still haven't heard from them. Actually, I'm going to call them this moment and keep typing while I'm on hold.

I have spent the last year battling the medical field to get T the care he needs. It feels like that campaign is winding down now. Rather than resting, though, I am gearing up for the next theater of this war: education. Just writing that word raises my blood pressure. I have talked to many moms who have children on IEPs. (That's how everyone refers to kids receiving special education: they're on IEPs. IEP stands for Individualized Education Plan.) Every person has had the exact same advice: Be ready to fight. Advocate. Fight for what you know he needs. Don't let them steamroll you. Fight.

I am too emotionally entangled to clearly and concisely say why that is so wrong. Maybe my sister will figure out how to order my thoughts for me. My kid has a disability. Rather than receiving help we receive resistance. It is absurd.

The lady from the Department of Developmental Disabilities told me on Tuesday that our culture respects and cares for people with disabilities. This was just a few minutes after she told me the county offers many of the most crucial services to only 10 people a year. That is such an outrage to me that I can't think straight.

Having a kid with a disability feels really wrong when I'm filling out papers and watching him fail assessments. It is rotten when we focus on everything that's atypical about him. It's horrible to watch strangers' faces change as they realize he doesn't understand them or can't do what they ask.

Having T as a son is really right. He is funny and affectionate and forgiving. It is a blast watching him learn new things. There is peace that washes over me when we cuddle. He gives the best, most enthusiastic welcomes I have ever heard.

It is amazing how life can be beautiful and painful simultaneously. I wish I could run away from the monster of disability care and just take care of my kids. I can't. I am thankful that God has given me the ability to see the beauty He has flooded my life with, even in the midst of the pain.

Saturday, September 20, 2014

I have a list in my phone that I compiled as blog-worthy moments happened in the hospital. I'm in a list mood, so this post will be an expanded form of that very list.

Stuff He Broke
How awesome is it that the first thing on my list has this title? Ah, T-Man. He falls behind on every assessment in every area of development, including fine motor and gross motor. (and we have had multiple assessments) So he has some mild deficits. Unless he's not supposed to get into something. If a thing is off limits in any way, the child becomes quite dexterous. He broke a phone, he dismantled a blood pressure cuff, he shot IV-protecting socks across the room, he ripped labels from their permanent locations, he nibbled at his IV, he climbed up the side of his crib, he ripped the case on my tablet, he removed his cardiac leads, he chewed through 2 IV arm boards.

T's Development
This one is sorta sad for me. During both admissions nurses told me they were confident T would catch up with his peers once he started receiving therapy. I didn't have the heart to argue with them, or tell them that he already has a boat load of therapy. The truth is, he probably won't catch up. Not ever. But he's so winsome that people can't see that.

Almost everyone I admit his challenges to is quick to warn me not to hold him back or limit his future. Are you kidding me? I drag him and his siblings to a minimum of three therapy appointments every week. I have had untold meetings and doctor appointments to get him the best resources possible. I have re-tooled my parenting, learned sign language and changed out our toy stash. I'm not limiting him. I'm giving him permission to hop, dawdle & sing to his own drummer.

Work With Kids?
Speaking of how I've changed, one of the nurses was there when I was tricking T into taking some gross medicine. He was astounded. He asked, with a bit of awe in his voice, "Do you work with kids?" I laughed and said, "No, but being Mom to this guy has made me more patient and wily."

Kinetic Sand
Someone who does work with kids, though, is T's Early Intervention Specialist, Miss Jan. Our whole family loves her. T calls all his therapists "Jan." She brought over cool things for him to play with while he was in the hospital. The sand stuff was so deeply loved by everyone that I called to find out what it was. Kinetic sand. It is marvelous; get ya some. M pretty much gave an on-the-spot commercial as he sang its praises. Even AB loves getting her hands in it.

Quilts
The hospital has a substantial stash of quilts that were used on his bed. It was a much cheerier way to guard the bottom sheet than the chux pads adults use. I realized after several days that I should have taken pictures of all the quilts that came our way. I was in an all-or-nothing mood, though, so I took no photos. Bright cotton, stitched together as a quilt, really does bring joy and comfort.

Food Train
When M's co-worker created our food train, I thought it was longer than we needed. During the re-admission, though, I was exceedingly grateful for the food that poured in. I figured we would be back on our feet in a week. Now, more than three weeks later I am just starting to get my first glimpses of "normal." I'm thankful, indeed, for the people that have brought meals.

Embroidery
I didn't spend much time with my sewing in hand. But those brief moments when T was asleep and I was awake were made more bearable with embroidery. Thank you Vicky Sue for encouraging me to start!

Autumn Came
I knew the weather was becoming cooler, so I started washing longer, warmer clothes for my family before we went back to the hospital. I didn't get entirely through the wardrobes, though. You'll likely see N sporting capri's and 3/4 sleeve shirts for another week, or so. I was sad that I wasn't the person to put everyone in pants for the first time of the season. I had no idea I liked doing it until I didn't get to.

Melody
I would be sunk without my friends. Turns out I have some who love my family almost as much as I do. Many of them checked in with me throughout this past month. Lots put on us on prayer lists. If I started listing them I would miss someone. I'm thankful for my friends.

Getting My Brain Back
I had an epiphany as I spoke with my sister on discharge day. Many moms look forward to the time when they get their bodies back. Loads anticipate the end of pregnancy, or the end of breastfeeding, or the end of the baby weight, or the end of being a human hankie. I don't really mind my body being made family property. Sorta. I would like to ditch the baby weight. But what I most want back is my brain. I want to be able to focus, to remember, to think about what I want to think about, to talk about what I want to talk about. Instead, I'm being pulled all over the place, I have a mere shadow of my former brilliance, I think about curricula and diagnoses and talk about a lot of cartoon characters. Though these little years are precious and I enjoy them immensely, I am really looking forward to getting my brain back.

Wednesday, September 17, 2014

Home! We came home yesterday. Last night I felt mild guilt that I didn't post an update, but it quickly passed as slumber overcame me. I was tired.

I got up and rolling at 0430. When T woke up yesterday morning I put him in clothes from home. I talked to M and told him to hustle. I don't know if it was a show of optimism or desperation, but I had all our bags packed long before we received our official discharge orders.

M, N & AB arrived a little bit before lunch time. Since we have such a long haul back home we decided to have a final meal at the hospital before we headed for home. Though there was a moment of heartbreak when Food Service called back to say there was no dirt cake, tragedy was averted by ordering cheesecake instead. We ate, we picked up heavy duty antibiotics, we walked through the cool parking garage, handed over our validated parking ticket and darted for the highway. (well, "dart" is a bit strong. M was driving.)

The drive home was filled with the sound of chatter and little voices bellowing along with a VeggieTales CD. We found home long before we pulled into our driveway.

When we did get to the house we unloaded the car then started tossing children towards their beds. Those beds looked pretty cozy, so I tossed myself towards my own. When I woke up I hopped on my bike and hauled N to the next town. He and I played at a park while we waited for M to pick us up. We came home, ate dinner, played, splashed children with water, soap and medicine, then went to bed. It was a good day.

Short of breathing, the most necessary things I did yesterday were take a nap and go for a bike ride. I was angry. At everyone about everything. I was ripping people apart in my mind all day. Fortunately, I kept my acid-laced tongue to myself, but the thoughts were still proving poison for my mind.

The nap gave my body rest. The bike ride gave me a place to pour out my emotional energy. Though some dude made a snarkarific comment about my biking pretty early into the ride. So I spent the first half of the trip ripping him apart in my mind. But the last half I enjoyed the wild flowers and the cool breeze and reminded myself to order a cushy bike seat.

The 30 minutes N and I spent playing while we waited for my man to pick us up were good for both of us. He has also been under tremendous stress as his mom and brother have spent two of the last three weeks in the hospital. We raced and slid and climbed and jumped.

I'm glad I'm still nursing AB. It gives her and I several opportunities through the day to be quiet and alone. I have also been holding her more than our usual. I am very happy to report that she is back to scrunching up her nose and smiling. She had quit doing that while we were gone.

T is good, a bouncing ray of sunshine. We're trying to limit the bouncing, but basking in the sunshine. We will see the neurosurgeon again next Thursday to stop the antibiotics and remove the second set of sutures. Until then, he's supposed to be mellow (riiiiiiight).

I have a list of other things I appreciated and observed while we were in the hospital this time, but this post is already long enough. I noticed on my blog stats that someone from Israel checked in. (Hi Mom!) Thank you to everyone for loving and supporting us through this time of hospitalizations.

Monday, September 15, 2014

We got happy news today: we get to go home tomorrow! Woo Hoo! I am so looking forward to having my whole family back together again.
T Man continues to charm everyone who comes to the room.
I miss M, N & AB.
We will go home on higher doses of antibiotics, then return in a week and a half to get the sutures removed.

Sunday, September 14, 2014

Tonight I am writing from the comfort of my own home. Pretty much as soon as I push "publish" on this post, I am diving into my bed. Unfortunately, T-Man is not here with me. He is still in the hospital. M went to spend the night with him tonight. I was getting super cranky this afternoon. I realized I had not left the hospital floor since Thursday afternoon. 72 hours with no fresh air. Not good. I'm pretty sure keeping patients (and their families) in isolation for so long is unethical.

M's parents have come back to help again through this unexpected hospital stay.

We will have more answers tomorrow on the next steps toward health for T.

I have spent these few hours at home catching up on my administrative duties. (read: paying bills) I am going to throw some clean clothes in a bag, check the locks on the doors and get some shut-eye. We have to be up early so I can get to the hospital in time for M to head to work. The hour and a half commute is getting a bit brutal. It has given us lots of opportunities to sing, though.

No pictures tonight, as I am actually typing at my computer, rather than swyping at my phone. We haven't hauled the "real" camera to the hospital. We pack pretty light. Especially for this second stay. I didn't bring any of our own toys or movies. I am finding we're bringing more food, though. Turns out T-Man only likes hospital potatoes. Hash browns: yes. Baked potatoes: yes. Tater tots: yes. Any other food: no. Thankfully he's been stuffing himself with chicken nuggets and trail mix from home. Protein is hard to get in a kid that is allergic to so many foods.

I feel like there's more, but my brain's a bit foggy. A sure sign I should take it to my comfy, freshly made, turned down, chocolate-on-my-pillow bed. (My man rocks)

Saturday, September 13, 2014

T had a great day!
He played, he ate, he got into tons of mischief.
At this point, we're pretty much waiting for Monday. They're watching his incision closely and continuing antibiotics. He'll have more testing on Monday to evaluate the tissue deep in his body.
N had a fabulous soccer game today. He excitedly told me, "I got to be the goalie and nobody scored on me!"
AB has had tooth #5 come through, #6 is quick on its heels. She has perfected crawling & is getting really good at pulling up to stand & cruise.
All three kids are gorgeous. Much like their daddy.
Enjoy the dirt cake and cool home-made sand-stuff. We did!

I think I will reduce the updates to daily ones. T slept thru the night. I have nothing else to report. Which is a good thing. Boring nights are a blessing.
When I asked if he was ready for sleep last night he jumped into my bed. Pretty cute.

Friday, September 12, 2014

The only thing worse than having a sick kid in the hospital is having a healthy one in the hospital. The child (and his mother) go stir crazy.
But if we weren't here getting the medicine T needs then he really would be sick. Though home sounds lovely, having an ill child doesn't.
I've been campaigning hard to be allowed to take T to a play room. Since he came in with an open wound, though, no one is agreeing. I am met with kind, resolute "no"s every time I ask someone new.
Doctors who specialize in containing infections came by today. They're part of the team now, making sure T is on the best antibiotics. Different medicines kill different bugs.
Daddy, N & AB came by for dinner and playtime this evening.
I was very discouraged on Wednesday as I prepared for this admission. Since the nurse practitioner first shook her head yesterday afternoon, though, I have been at peace. It helps that things are going so well on the homefront. Many, many people have stepped up to help us out. The other reason for my emotional health is prayer. Your multitude of prayers have been, and will continue to be, answered. Thank you!

T slept great. Which is astounding considering someone came in every 2 hours. His dressing is dry. He's not eating well, but he's drinking plenty.
This post is short because parenting this little boy is a full contact sport today.
He just took a bite out of my cup. Gotta go!

Thursday, September 11, 2014

I'm posting a quick update before I rest my head on surprisingly comfortable plastic pillows.
The MRI showed typical angry tissue that happens post op, but nothing requiring more surgery. Woot woot!
While sedated for his MRI his neurosurgeon put sutures back in his incision. I'm not sure how many. I just know he used a plural to describe them. A dressing is currently covering the site.
Pretty much we're just going to hang out here in the hospital as we wait for the IV antibiotics to do their thing.
T might be grounded til he's 39 by the time we leave. He's playing with the scopes, he's throwing toys over the rails, he's chewing his IV tubing, he's drooling water & gargling his meds, he's shining scanners in his eyes, he's picking at the IV.
In short, he's acting like a healthy little boy. Which is actually awesome.

I'm noshing on chocolate covered pretzels while T Man is in radiology. He'll be there an estimated 2 hours. He's having an MRI of his spine to make sure the leaking wound is superficial. A deep leak would require surgery. He is also going to have his incision site re-sutured. It may be one stitch or ten. They'll know better when they can poke at him. He'll be in the hospital at least through the weekend to get IV antibiotics. He fell asleep watching VeggieTales. T is so much healthier this hospital stay. He's exploring all the things he didn't get into before. Fun times.
The patio where I'm eating boasts flowers, sunshine, a gentle breeze & sparrows fighting over pizza. I'm off to find a cozier spot to wait. I have my embroidery with me.

Tonight I was sad as I laid AB down for the night. I love the feel of her in my arms. I wondered if I would get to hold her again tomorrow night. Will I be bending over her crib railing or my pump?

Last night I was happy that N and I had made up much of the schoolwork he missed in the last two weeks. Tonight I wonder if we'll face another academic setback. Will he still remember his even numbers, how many rules were in the Code of Hammurabi and the true definition of security?

M and I are talking, fighting to stay connected while we plow through a pile of to-do's. His nose is buried in his laptop. Mine is smelling Jell-o as the pouring powder lifts from the container to my nose.

Jello-o makes a weird sound when the boiling water hits the powdered chemicals. The sizzle is quiet, unlike IV pumps.

Tuesday, September 9, 2014

I have fallen apart. I don't pray. I don't exercise. I don't read my Bible. I don't stop eating when I'm full. I waste time. I am impatient. I am selfish. I am uncaring. It has been a progressive deterioration. I have tried, without success, to pinpoint when the destruction began. The starting point really doesn't matter, though. The point of change, does.

The absolute point of change occurred on January 23, 2003. That's when I became a Christian. That was the day I sat crossed legged on my white eyelet comforter and sobbed out my acceptance of, and dependence on, the mercy of Jesus. In that moment I died to sin. The Bible tells me so. We should have had a funeral.

Christ began revealing immediately that the old me had died. The next time I flipped someone off He gently showed me I didn't do that anymore. The music I used to groove to started bothering me, the lyrics washing over my brain like vinegar. I heard myself curse and cringed. A relationship I had severed caused an ache in my soul.

As the old habits exited, some new came in. I read my Bible and thrilled at the treasure within it. I prayed and actually communed with God. Not just words pointed at the ceiling, I talked to my Creator. I grew modest. I took counsel from those who oozed love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.

In recent years I have slid, though. I have started acting like that girl who died eleven years ago. How can a vibrant, eternal being act like a corpse? Perhaps I lapsed because it is easier to do behavior management than nurture a relationship. Staying with God, listening for His Voice, waiting, and depending take effort. Mere religion is easy. Wrestling with God requires energy.

I've known this for awhile, but didn't know how to fix it. I was paralyzed by feeling guilty for allowing my soul to grow so stagnant.

My new strategy for living the reality of Philippians 2:12-13 is centered on music. To remind myself that it is God Who works in me, I sing and hum a hymn throughout my days. My favorite verse of Come Thou Fount says:

O to grace how great a debtor

Daily I’m constrained to be!Let Thy goodness, like a fetter,Bind my wandering heart to Thee.Prone to wander, Lord, I feel it,Prone to leave the God I love;Here’s my heart, O take and seal it,Seal it for Thy courts above.

To spur myself to wake up, fight on, and work out I am setting a new ringer on my alarm. (I hope my roommate doesn't mind) The video is below. The lyrics are posted below it.

I will let you know if this new musical strategy has positive results, or not.

[Intro:] ~John Piper~

I hear so many Christians, murmuring about their imperfections, and their failures, and their addictions, and their shortcomings. And I see so little war! Murmur, murmur, murmur. Why am I this way? Make War!

[Verse 1:] ~Tedashii~Bang with me/ba-bang bang, ba-bang with meNo more playing games mane/cause this thang can get riskySo man if you in Christ/TAKE UP!!/your cross quicklyStand fearless on the frontline/time to come with itDo the right thing/WAKE UP!!/and lets get itI ain't even in the ring/they throwing blows like RiddickPersistently attacking me/they're even in the back of meIt's either fight or lose my life and I can't take this passivelySo what you think I'm bout to do/I'm bout to do what I can doTrust the ONE who got me through/and fight like it was after schoolNever giving up/steady, standing on the battle fieldFeet firm to the ground like I stepped on Chapel HillFlesh feeling frisky, sin persuades and tempts me/Satan cheers me on/guilt followed by convictionIt's the same ol' trap/and we fall like we defenseless/Work your senses/grow in wisdom/stand firm and be relentless/

[Hook:]I MAKE WAR!/Cause sin never sleeps/It's got me in a trance/you can see it in my dreams/I MAKE WAR!/Man I beat my flesh/To the death/every breath/like I beat my chest/I MAKE WAR/sun up/I MAKE WAR/sun down/I MAKE WAR/time in/I MAKE WAR/time out/I MAKE WAR/against lust/Against pride/against me/until I die/

[Verse 3:] ~Tedashii~I'm a Christ representer, fit to stand and deliver/Cause a lot of my believers struggle with their agenda/So I dropped this on an ADAT/just so you could come play back/A hit to be encouraged that rocks you with truth from, way back/So listen up to it ASAP/like you do a Lecrae track/I'm spittin' written visions to put on heads like a wave cap/Sinning, naw we don't play that/cause that's the way that a slave acts/I'm filled with the Spirit so tell them dawg this is pay back/As you begin to copy the carbon copies of Christ/And conform to His written image you should be shinning a light/If you not, why is that?/Is it fear that's been grippin' you/cause you scared they'll be dissin' you/Flipping birds while that spit at you/If you not, why is that?/it don't matter so bump it/perfect love cast out fear and He ain't save us for nothing/his is a privilege (privilege)/your life to give to Him (give to Him)/so stand firm for Him dawg and lets get it in

Thursday, September 4, 2014

T is still struggling with pain. We are hard pressed to get him to walk. He prefers crawling. Or better yet, being carried. His back is noticeably swollen. I wouldn't want to sashay about the place either, if my back looked like his. We are going to see someone from the neurosurgery team tomorrow to see if he is ready to have his sutures out. I will also mention him still needing the big-time pain meds to control his discomfort. In the meantime, we certainly appreciate any and all prayers for T's continued healing.

In happy news, T has been sleeping through the night.

Both AB and N have teeth on the move. So we're flinging pain medication around here like it's champagne in the winner's circle at Indy.

Tuesday, September 2, 2014

In an effort to wean us all from my recent heavy blogging habits I am posting an update today. Who knows what the future holds? Maybe all this blogging will spur me back into action. I might even return to weekly writings.

Home is a beautiful thing. I slept in my own bed. T Man slept in his own bed. He slept through the night for the first time in a very long time. I did not. AB is taking full advantage of having her mommy back, so she was up last night.

I did sleep in this morning. Rather than being awakened by a nurse coming in to give medicines or check vitals or do an assessment, or a physician coming in to poke and prod, I was stirred to consciousness by my man telling me T had eaten like a beast. (cue happy feet)

Now being home for a bit more than twelve hours, I have compiled by Top Five List. These are the things I most appreciated while we were in the hospital.

#5.

Parent Sleeping Accommodations

Though the dreaded bed-chair wasn't particularly comfortable, it is much better than sleeping in my car or a plain ol' chair. The hospital fully expected me to stay with my child. And they provided a way for me to do it. Even in the ICU. They also cheerfully provided me with linens and pillows. The bed below is the one in his non-unit room. It was the biggest one by far. And M never joined me.

#4

Guest Trays

The hospital has meal cards available for guests to purchase. Six dollars buys you one entree, two sides, a drink and a dessert. This is a picture of the last half of some dirt cake. It was yummy. And yes, I did eat the gummy worms. I'm neither too old nor too dignified to tap into my inner eight year old. The guest trays are really nice because they are delivered to the patient's room. I didn't waste any time away from my boy by going to the cafeteria to eat.

#3

The Child Life Specialists

These people are awesome. They have masters degrees and are really good at helping ease children and their siblings through the medical process. But mainly, they get paid to bring cool toys to the kids. They came by every day to see what T wanted to play with. If I thought of something after they had come through, the nurses paged them. They delivered movies, cars, books, trucks, squeezy balls, a floor mat, bubbles, pinwheels and this awesome thing. It's a mobile sensory unit. It's the reason why T finally got to his feet. It plays music and it boasts a ceiling projector in addition to the bubbles and lights you see.

#2

The staff

Pretty much everyone was great with T. (and me) There were only a handful of people that I felt weren't listening to me. Everyone else seriously weighed my opinion. I was invited to join them on rounds each morning. They played with T. They were patient and kind. Jillian was our nurse all weekend and the one who got to wave good bye to us yesterday. Vanessa only took care of T yesterday, but she was so good to him. When she was in the room it felt like we were her only concern. She oozed cheerfulness

#1

A happy, healthy, whole boy

Getting to walk back out of the hospital with this guy in our arms is worth it all. Here he is helping the docs with their final assessment before we left.

And drank!
And stood!
And took a step!
Turns out he needed his brother and sister and a tower of sensory input. (see pictures below)
He stole AB's cracker. He drank after he watched N have some juice. And he wanted a better view of the mobile sensory unit, so he stood up to get it.
Yay!
Yay!
Yay!
Yay!

Today I am refreshed of soul. (envision me doing an awesome happy dance here) That would be because God is strong, not because I am. The steadfast love of the LORD never ceases;his mercies never come to an end; they are new every morning; great is your faithfulness.
Lamentations 3:22-23
Interesting that those beloved verses are found in Lamentations.
T had a very restless, fretful night.
I'm glad they have coffee here.
BUT...He did eat a few non-banana bites of food last night. Woot woot!
T was part of a feeding group all summer to address his sucking, rather than chewing foods. Last night I used a lot of their techniques to get him to eat. pretty much I let him play with his favorite foods. Every once in awhile a bite would slip in. He also shoved a lot of cold tater tots in my mouth. Blech. Only a mother's love.
We're doing the play-with-your-food routine again this morning. I'm typing in between bites. I've already asked M to bring me clean pjs.
My outlook is good. My view is great.

Sunday, August 31, 2014

Tonight I am soul-weary. My body is also remarkably tired. Though being worn out doesn't help matters, this is a distinct problem.
This exhaustion is caused by frustration, hopelessness & worry.
T still won't eat.
Or drink.
He doesn't want to move.
He doesn't seem to be in pain, but he just wants to lie on his back. That is alarming for any 2 year old, but especially for my go-getter.
Everyone agrees that he needs physical therapy (PT) and occupational therapy (OT) to evaluate him. The docs ordered it. But it's Sunday. Tomorrow is a holiday. Therapists don't work weekends or holidays. (remind me to look into becoming a therapist when I have an empty nest)
It's not all doom and gloom here, though. T does still like to dance.
I read some Charles Spurgeon earlier that seemed to be meant for me. I am not suffering as many others are, but today is hard. Here are some lines:Happy storm that wrecks a man on such a rock as this! O blessed hurricane that drives the soul to God and God alone! Oh, tempest-tossed believer, it is a happy trouble that drives thee to thy Father! Now is the time for feats of faith and valiant exploits. Be strong and very courageous, and the Lord thy God shall certainly, as surely as he built the heavens and the earth, glorify himself in thy weakness, and magnify his might in the midst of thy distress. The grandeur of the arch of heaven would be spoiled if the sky were supported by a single visible column, and your faith would lose its glory if it rested on anything discernible by the carnal eye. May the Holy Spirit give you to rest in Jesus this closing day of the month.
I am definitely weak. My prayers have become simple: God, show us what is going on. Thank you for this boy.

Bummer report this afternoon. T is not going home today. We have been able to coax bananas & bologna into him, but no fluids. So the IV went back on a little while ago.
What may turn out to be good news is he has thrush. Hopefully he'll feel like drinking when that clears up. He has already had his first dose of medicine for it.
In happy news, Daddy came today with N & AB. He also had YehYeh & GninGnin in tow. T hadn't seen his sister since Tuesday. It was sweet to hear him yell her name when he saw her. He actually asked to get out of bed so he could play with his sibs on the floor. We felt almost normal for five minutes. Well, "normal" might be a mischaracterization. Normal for us.
I'm thankful for the peeps at church & M's work who are bringing food. The meals started rolling in last night. It's a relief to know my family won't be eating restaurant food the whole time I'm gone. The cooking part of my job is covered.
I cringe to think what the house will look like when I return. So far no one has signed up for maid duty. Imagine that.
T just fell asleep for a needed nap. I believe I will try to do the same.

T slept well last night. He still isn't eating or drinking much. He is definitely more chipper than he was last night, though. When the day nurse comes in we'll talk about the next steps. I'm not sure if they will do more anti nausea medicine or wait to see if he eats more on his own.
I can tell I've been here too long. I'm tired of dealing with health care providers. I feel angry and defensive. Please pray I don't destroy my witness by choking a nurse with his/her stethoscope.
Right now we're chilling in the rocker, watching a show.

Saturday, August 30, 2014

Today I feel like a teenager again. And not just cuz I've, like, not slept.
I have been on such an emotional roller coaster today.
Our morning started at 0400. Not fun. T was cranky, I was cranky. But then we ate breakfast and the world seemed a brighter place to be. Though, in hind sight, that may have just been the sunrise.
The doctors came by and said to get rid of sedation, catheter & bed rest. Woo hoo! But then he got restless and shaky as the meds came off. Sad.
We got a visit from Daddy, N & AB. It was nice to see those beloved faces, but a bummer we couldn't all be together. AB is too young to go to the unit. so M & I tag teamed getting cuddles with T.
T got to transfer to a neuro floor. Yay! Now we can stay in his room to eat, AB can join us & N isn't limited to 15 minutes per day. Also, as we were transferring, Miss Bethany & "Dr" Josh came to visit. They brought him his own guitar; just like his favorite toy at their house.
The surgeon came by and said T looks so good that he can go home tomorrow. Hip hip hooray!
T refused to eat lunch. T refused to eat dinner. He wouldn't drink a drop. The hope of going home seemed to be crushed.
But his night nurse gave him medicine to settle his tummy. He just asked for a few bites of banana. Home gleams in the distance again, beckoning us to return.
T is watching a show while I wrestle with swype to get this post together. I'm about to help him fall asleep bymodeling how to do it.
My sister got home safely. M's parents got here safely.
Everyone tells me how cute T is. I'm rather inclined to agree.

Prayer + Breakfast = no more crankies!
Neither one of us has thrown a toy in the last 3 hours.
Thank you
Praise God from Whom all blessings flow!
Watching TV, waiting for docs to round so we can start the process of sitting up.

We've been hit with a crankies outbreak. It's hard to know who got it first, but it is contagious. Mother and son keep passing it back and forth. In an effort to stop the spread I have excused myself to the lactation room to pump. Maybe ten minutes apart will be enough to halt the vicious cycle. T is watching one of his favorite shows. The whishing hum of my pump is a nice change in sound input for me. I know this is an awkward place to stop, but I can't think of a clever ending.

Friday, August 29, 2014

We had a busy day today. Though, alas, it did not include sitting up. T is on a crazy high dose of sedation. And he was wide awake all day long. He didn't even take his usual afternoon nap. Though he is obviously tolerating the maxed out meds well, they want to wean them slowly. Friday night is not the best time for that. Also, the extra day of rest will only serve to help Mr Wiggle Pants' body to heal. So now the plan is to start sitting up tomorrow about mid-day.
We transferred to a different unit today. He is still in ICU, but one with a different specialty. The one he was in before was busting at the seams. Speaking of his previous unit, there's nothing like hanging out in a children's hospital to make you thankful for the child you have.
T continued to eat well today.
I covered the call light with a blanket since T kept pushing the button. He redirected his energy to the light controls on his bed. His room looked like a disco many times as the lights strobed off and on.
I left the hospital for a few hours this evening. M stayed with T while I ran home. It was nice to sit at my own table with my other babies, sister & niece. The niceness was amplified by eating a warm, home made dinner (that I didn't prepare)
AB ate really well. That was a comfort to both of us. I got to fuss over N's heat rash a bit and give him some focused attention. We finished out the night with a rousing game of Sorry.
I'm posting pictures of the pull out chair that M & I shared, as well as one of T earlier today. You'll see from the supplies on the chair that it is a bit narrow. Fortunately M is as wide as a phone, so that gave me the space of paper. :-)
We are holding up better than we should be. Thank you for praying. God is kind.

Almost there! T will be able to start sitting up this evening. He had one rough patch last night. Once he got medicine, though, he had a peaceful night.
He just finished breakfast and is trying to doze back off. He is squishing my hand onto his face. Unfortunately it's too dark for me to get a picture of it.
The surgery team just came by. His incision still looks good. He's moving his legs well. He will stay in the PICU overnight, unless there is a bed crunch and they need his room for a truly sick kid.
My sister, the rock star, is still taking really good care of everything at home. But my other babies need me, too. I'll go home for a few hours this afternoon & see if I can coax AB into eating more.
Here is a picture from earlier this morning:

I finished the block yesterday. Woo Hoo! I likely won't get a new one started today, as I will be going home this afternoon for a few hours. I'm including a picture of the quilt that the blocks will go into. Mine is going to be pink & brown, though.

Thursday, August 28, 2014

Iv fluids: came off today because T is eating and drinking so well.
Bath: T got a bed bath today. He seemed more comfortable in fresh linens and shiny clean skin. The old nurse in me dies hard. It weirded me out to bathe him without gloves on at the beginning.
Squeezy balls: are the only reason he still has all his tubes and lines attached. The orange one has been a constant companion.
Movies: we've watched tons. I have no idea how people did this before technology.
Dressing: is off. His incision looks good. It's about 4-6 inches long, by my eyeballing estimate
Bologna: T tried it for the first time today. The verdict - he loves it! I think I have something to add to my grocery list now.
Daddy: is here! He'll be staying the night. I'm going to try to convince M he should sleep with T. To strengthen their relationship. Not because I want the pseudo-bed to myself

Flashlight: T had a rough time this morning. Morphine and a roaring flashlight got him through. And answered prayers. I don't know what kind of brain thinks up a flashlight that roars when you squeeze its tail. But I'm glad the thing exists.
Call light - T found the buttons on his bed today. Mr Fidgety Fingers proved the secretary to be patient.

T had another great night. Woo Hoo! I did sleep with him for a few hours. Fortunately that's all it took for him to settle down. My back was actually happy when I moved to the bed-thingy.
This day looks like it will be filled with more resting. We are pretty much just waiting for the planet to twirl around a few more times while T's body heals.
Thank you for your care and prayers!
Almost everyone who walks in this room chuckles when they see T Man. He looks very chill in his bed.